My nightmare come true: Crohn's and a Stoma bag

Sunday, 31 January 2016

Life is unpredictable and things don't always go to plan.............

On 28th of December 2015 I was admitted to hospital after being in excruciating pain. Which I had been told was a result of Crohn's disease and abscesses that had formed towards my back, as a result of a perforation in my bowl. While I was there the doctors did some tests and on the 1st January I was told the only real option I had to get better, was to have an emergency surgery. As I wasn't getting any better and my body was still fighting off a previous infection I had been diagnosed with a few weeks previous to being admitted this time around.

My heads spinning the ultimate ultimatum, my soul was literally in turmoil, lying there having heart palpitations an all sorts!.......

So this is what it's like when you come to a cross roads, I didn't have to or want to agree to having surgery but I didn't really have a choice, as I wasn't getting any better and the longer I put it off the more complications I'd have later. So I took the plunge and agreed to have the surgery. Within a matter of hours I was in theatre having my emergency surgery. It's safe to say I've never been so scared in my life especially knowing there was a high chance I would end up with a stoma bag.

Now to give you a bit of a background story back when I was first diagnosed with Crohn's I wasn't given much info straight away so I went home and Googled it (worst idea ever) all I saw were stoma bags and the words surgery and incurable!
I legit cried so much, my face blew up an was ever so swollen (does that happen to anyone else or is it just me?) I was distraught and was adamant I never wanted to have surgery or a bag. From all the info I'd gotten neither of these things would cure me, therefore leaving the possibility of these things to just make me worse in the future, made no sense to me at all.

So back to present time I'm on my way to surgery praying like mad, 1. I don't want to die 2. I don't want a bag of shit on my side forever but if I have to, I begged I'd be given the strength to deal with it and that I wouldn't have to have it for long.

So I came out of surgery over 3hrs later to find out they'd removed my appendix, taken out the section of inflamed bowl and managed to get most if not all of the abscesses out. Now here comes the big plot twist BRACE yourselves.....

The doctor informs me an my mum that they didn't find any evidence of Crohn's disease in the left over bowl and that it seemed like I had chronic appendicitis and that, that was the root cause of the abscesses and my infections. To make sure they took a sample of the infected area to test to see if there was any crohn's in it.

( side note; I had been diagnosed with crohn's for over 3 years and it had taken the first hospital I was at almost 6 months to diagnose me :/ )

So as you can imagine I'm glad that the surgery went well without a hitch but low key fuming that I may have been Misdiagnosed and to add to the fire I found out a couple days prior that the previous hospital I was at had withheld some info from me until I had become seriously ill and been admitted to hospital ( I'm not a very happy bunny). Plus the drugs I was on were very strong would have contributed to making my condition worse.

Imagine for 3 years and a bit I'd been struggling to come to terms with this disease and now there's a chance I might not have it at all and might actually get better!!!! My emotions were all over the place to be honest I wasn't sure how exactly to feel it was a lot to take in.

But wait the icing on the cake I now had my own handy dandy stoma bag hanging off the side of me (I know y'all must be wondering). Honestly, I was to off my head on their drugs to think to much into it. I think I may have been in shock about all the events that had just taken place.

So I'm out of surgery over the shock and when I tell you I haven't felt so good in years. It was so good to not really be in pain besides being sore from the stitches an in a bit of discomfort I felt amazing. It's mad to think that I'd been in such pain non stop for over 3 years. It's such a simple thing that a lot of people take for granted but in that moment I've legit never been so thankful and felt so blessed in my whole life! THIS WAS AND HAS BEEN A MAJOR TURNING POINT IN MY LIFE!

Yes my worst nightmare had come true, but if I'm honest with you it's no where near as awful as I imagined. Don't get me wrong the first few days where definitely the hardest I cried and pleaded and wished I didn't have the damn stoma bag, Once I'd calmed down though it was bearable. It got me thinking that maybe all the hard difficult stuff I'd been through before this point was some how preparing me for this next chapter in my life. Considering everything that's happened in the last few weeks I'm certain God has kept me and protected me. If I had had surgery before hand with the other hospital before I had the abscess and extra problems I really believe I'd probably still be thinking and being treated for crohn's. There's no way I'd feel safe putting my life in the hands of doctors who have been effectively playing games with my life for over 3 years.
This experience has made me value time so much more, that's 3 years I cant get back, 3 years wasted treating a serious disease that apparently I never had, 3 years of shoving drugs into my body that destroy your immune system. 3 years of the biggest struggle of my life that could have been avoided. Time is precious and we should all strive to use it wisely as it can slip away from us in an instant.

Furthermore if the abscesses had been positioned differently things would have been much worse and I could have lost my life or ended up paralysed. I'm thankful I ended up at a hospital in London while visiting family for Christmas. I swear God puts you where you need to be and provides you with everything you need at the perfect time. The doctors worked so quickly and where very diligent and on the ball you could tell they genuinely cared and took pride in their jobs.

While I was in hospital I had a stoma nurse show me how to clean and change the bag. I really can't explain how much love I have for my stoma nurse. She's so amazing I just can't express. She really made it easier for me to transition and deal with the situation. She has such a bubbly personality, her cheerful mood is contagious I swear I don't understand how she can be so happy working with poo all day; but I thank God for her she really has been a blessing and very informative I've learnt so much from her in just a few short weeks.

I currently see her once a week as my bowl is still shrinking as it was extremely swollen. She's always available if I have any questions to ask, she's just so understanding. It's always nice knowing people are doing the utmost to fulfil their job requirements and even go above and beyond that, as they are so passionate about what they are doing.

Honestly I just don't think I'll ever know why God would let something so horrible happen to me I don't think I'll ever truly understand but what I do know is that he brought me through it and I'm stronger and a better person in my opinion for it.

My story is not over yet, but I'm a fighter and I refuse to let any situation keep me down.

Always remember there's a silver lining and things could always be worse so be grateful for any small mercies afforded to you.

P.S. On the 1st Feb I'm getting my stitches out from around my bowl which I'm not looking forward to. I had one taken out the last time I saw my nurse, admittedly it wasn't that bad. But it's really sore around the bowl near some of the stitches where its pulling so I'm really not looking forward to it, wish me luck !

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About Me

Hey I'm Shani (pronounced- sharnay) :), currently 22 years old and a fashion design student. I'm trying out something new, hoping that someone might gain something from the content I put out. I believe knowledge should be shared otherwise its a waste having it. So I'm going to share my knowledge and thoughts with you, hoping you enjoy what I have to say, stay tuned.................